A Web-Based Caring Training for Caregivers of Children with Cerebral Palsy: Development and Evaluation.

Objectives
Caregivers of children with cerebral palsy (CP) have to spend a long time to take care of their children. We aimed to develop a user-friendly web-based intervention for training parents of children with CP and evaluate the process of development using modified CeHRes roadmap.


Materials & Methods
The study was conducted from September 2016 to September 2017 in Tehran, Iran. We did it in four main steps including determining the needs of users, content development, design, operational development and evaluation.


Results
The website for caregiver training provided nine general topics and had the possibility that the caregivers could determine their educational priorities. Moreover, the users could share their experiences with other users and could ask questions from an expert. Ten caregivers completed a usability questionnaire after four weeks of use. The average score of 70.5 out of 100 was shown among caregivers. The average score of all statements was above three on a Likert scale between 1 and 5.


Conclusion
The website has the possibilities including registering caregivers of children with CP, the possibility to confirm registration with an SMS and the possibility to determine the caregiver educational priorities. It has the usability for training caregivers of children with CP.


Introduction
Cerebral Palsy (CP) describes a group of permanent disorders of the development and posture, causing activity limitation, attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain (1). Children with CP are more dependent on their caregivers to perform A Web-Based Caring Training for Caregivers of Children with Cerebral Palsy: Development and Evaluation their Activities of Daily Living (ADL). As a result, parents of these children have to spend a long time to feed, bathe and clothe a child with the low capability of mobility (2). Therefore, taking care of these children with disability is time-consuming and is a source of stress for their caregivers.
Dealing with stressful situations has a negative impact on caregivers' quality of life. Taking care of a child with CP affects physical and social welfare, freedom and independence, comfort and financial stability of the family (3,4).
Majority of caregivers of children with CP had a low or moderate level of knowledge about appropriate caring for their children (5). Some caregivers do not receive any training in this area or the training they receive is not commensurate with their educational needs (6). To reduce or prevent their problems, these parents and caregivers are required to receive special training in caring for these children. There is evidence that shows the effectiveness of parental training in increasing parents' knowledge, reducing their stress and improving their quality of life (6)(7)(8). There are several methods for caregivers' training including face to face training, training through workshops, offering booklets, training through videos and using telehealth. The effectiveness of caring training through workshops, offering booklets and face to face training in Iran is documented (7,9,10). In the field of telehealth, there is growing evidence of providing web-based interventions for people with diabetes and another diagnosis in Iran (11)(12)(13)(14).
Internet penetration rate in Iran is more than 50% and increased dramatically in recent years. Internet penetration rate is an indicator that represents the percentage of the population of a country or region that uses the Internet (15).
Telehealth is a broad term that includes both telemedicine and telerehabilitation and refers to the use of electronic information and telecommunication technologies to provide health-related services (16). Telehealth as a model of service delivery can be used in various fields including evaluation (tele-evaluation), intervention (tele-intervention), consultation (teleconsultation), monitoring a client (telemonitoring) and supervision (tele-supervision) (17,18). Interest in the use of web-based intervention is increasing along with development in information and telecommunication technologies. It is now widely used in various fields including education and counseling for different age groups and a variety of diagnoses. Therefore, this model can be used to provide caring training for caregivers of children with CP. The use of telerehabilitation in comparison with other interventions provides benefits such as better clinical outcomes, more participation, and completion of interventions, more time for consultations and more client satisfaction (19). Accessibility to professionals and avoiding unnecessary delays in receiving care are other positive points about this model (19). Rehabilitation is a long-term and continuous process which sometimes leads to the disruption of a caregiver's job, daily routines and the role of the family member. Satisfaction of clients with this model is high due to saving their time and low cost of services (19,20  Therefore, a web-based intervention for caregivers of children with CP is more appropriate for more experienced caregivers.
In general, the quality evaluation of the developmental process of a web-based intervention can be done through various procedures including system quality, content quality, and service quality.
System quality means the technology is userfriendly, secure and easy to access. Content quality means the content is understandable, meaningful and convincing. Service quality refers to whether the service is provided sufficiently (24, 29).
This study was conducted with two aims. The first was to develop a user-friendly web-based intervention for training caregivers of children with CP. The second was to evaluate the process of development. To achieve these aims the method of development and evaluation was specified by the researcher and also the factors affecting the researcher's decision about the method was determined.  − Value specification: based on the needs identified in the previous step. Design a prototype for a website and some prototypes for mobile application with powerpoint. Then presented to participants (n=28) and they were interviewed with semi-structured interviews about usability and clarity of prototypes.
− Design of the technology: design were based on the previous steps information. Usability evaluation was done with think aloud modeling technique from user (n=5) and expert (n=9).
− Pilot study for two months (n=17), telephone interview about the helpfulness of the program and decisions were made about necessary changes by expert consensus.

Design
A paper prototype was first designed. Then, in a meeting with a website designer the paper prototype was discussed and requirements for the development of the website were determined.
Then, a power point prototype was designed and evaluated by the research team. After that, the website was developed by the designer. The website was developed in HTML, jQuery, and bootstrap (9) and the database management system SQL server (2014). The program was written using Asp.net MVC (4).

Operational and Evaluation
In this step, the web-based training was applied The scores of statements in negative terms were reversed. Higher scores reflect greater usability of the website.

Content development
The summaries of suggestions were discussed by the research team and decisions were made about changes. The topics provided in face to face training were maintained for web-based training.
Self-care education (for caregivers) and play were added to the topics. Therefore, web-based training was prepared in nine general topics ( Figure   1).According to the experts' suggestions for greater impact, the training was presented weekly.  ir). All stages of development all web design standards were noted (33).

Operational and Evaluation
Participants' demographic information is shown in Table 1. In this step, questions asked by the caregivers or difficulties faced by them during the first meeting were summarized and discussed by the research team. For example, pages whose font size was said to be small or whose image size was thought to be large were resized by the designer. In accordance with research factors that influence researcher's decision, CeHRes Roadmap was used with some changes. For example, the first two steps of this method in our study were conducted as a separate study to determine the user's needs. In the second step, the content was developed. Next steps were based on the roadmap.
In our study, the first step was to determine the user's needdone in a separate qualitative study.
Mothers mentioned that they will be motivated if more attention is paid to their educational needs then in our study the possibility of determining educational priorities was considered on the website. In addition, they wanted to have networked caregivers with similar experiences the possibility to communicate and express similar experiences was provided on the website. They approved the appropriateness of content with their needs. The effectiveness of the face to face content was also approved in studies (7)(8)(9)34). The step "determine the needs of the user" has been conducted as a first step in developing a web-based intervention study (22,23,(25)(26)(27)35). This step was done followed reviewing relevant literature and interviews with the users. Content and related technology requirements in accordance with user Most of caregivers of children with CP in the study context were mothers. Then caregivers in this study were mothers. This might limit the generalizability of study results to fathers who are also caregivers.
One of the limitations we encountered during the study was the speed of the internet and its interruptions, which user had to reconnect.
In conclusion, for web-based intervention development, it seems more effective to first determine study needs and then proceed with content development. If face to face intervention is available, it can speed up the design process.
The main components of face to face intervention could reconstruct for web-based intervention.
If there is no access to face to face intervention, content development can be conducted based on the literature reviews and experts' and users' views depending on the objectives of interventions and theories and methods. Then content adaption must be done by specifying technical requirements and methods for web-based content. In the third step, designing paper or PowerPoint models and receiving users' and experts' comments and designing a prototype model and initial testing can improve the process. Finally, preliminary testing seems to be helpful for summative evaluation ( Figure 2). To develop and evaluate a web-based intervention access is essential including access to various experts including website design experts and experts familiar with content, hardware and software accessibility, access to the same people supposed to use certain websites, access to finance.
In addition, lack of time that affects the researcher's decision during the research process.
Our website has the possibilities including registering caregivers of children with CP, the possibility to confirm registration with an SMS and the possibility to determine the caregiver educational priorities and also has the usability for training caregivers of children with CP.